Handle With Care

Sunday

Nov 25, 2012 at 12:01 AMNov 25, 2012 at 2:30 AM

Mateo Lopez's bright blue eyes twinkle as he offers up a cheeky grin. His mother, Whitney, reaches inside his Winnie the Pooh crib to tickle his tummy. His father, Dominic, reaches down to gently redirect the toy motorcycle navigated by his 3-year-old brother, Kyenne.

By Sanne Specht

Mateo Lopez's bright blue eyes twinkle as he offers up a cheeky grin. His mother, Whitney, reaches inside his Winnie the Pooh crib to tickle his tummy. His father, Dominic, reaches down to gently redirect the toy motorcycle navigated by his 3-year-old brother, Kyenne.

It's a happy family scene. But the steady click and whir of nearby monitors provide sobering background music as the baby's nurse, Toti Enders, discusses the realities of life for Mateo.

"Mateo is the most medically involved and fragile child we have under care in the valley," says Enders, a Jackson County nurse with 30 years' experience helping medically fragile children.

"The family needs help," Enders says. "There is no way, alone, that they can do all that needs to be done for Mateo."

Enders is hoping the community will come together to support the Lopezes by helping them get a vehicle large enough to transport Mateo and all his medical equipment. They also need a generator and help with medical bills, she says.

"Right now Mateo has to be transported by land or air ambulances to all of his medical appointments," Enders says.

Whitney rides with the baby in the ambulance. Dominic must follow in their vehicle with Mateo's backup ventilators, oxygen tanks, suction pumps and a host of other medical equipment he'll use once they arrive at their destination, she says.

"In his case, he can't even be minutes without (his life-supporting equipment)," Enders says.

Mateo made his entrance into the world at Rogue Valley Medical Center in January 2010. Born two months ahead of his due date, Mateo spent his first eight weeks in the neonatal intensive care unit.

Mateo's premie issues were further complicated by dwarfism, says Whitney.

Neither Whitney, 25, nor her 33-year-old husband carry the gene for dwarfism. But Mateo was born with the most common type of dwarfism — achondroplasia — that is a "new gene mutation," Whitney says.

The condition causes disproportionately short arms and legs and other distinctive physical traits such as a large head, prominent forehead and flat nose bridge. Nearly all people with this form of dwarfism have normal intellectual capacities, according to several medical websites.

"At that point, we thought his dwarfism was the issue. And we thought, OK, we will deal with it," she says.

The family's world was turned further upside down when Mateo began having life-threatening apneic seizures just months after they returned to their Gold Beach home, she says.

"He would turn blue and stop breathing," Whitney says. "We would rush him to the hospital. It was pretty terrifying."

Frightened and searching for a way to stop the potentially deadly seizures, Whitney and Dominic took Mateo to Doernbecher Children's Hospital, where doctors decided to perform an operation at the base of Mateo's skull. The hope was that lessening pressure on Mateo's spinal column would stop the seizures. But the surgery did not help. Nor did any of the myriad medications doctors tried, Whitney says.

"He was having between 15 and 25 seizures a day," she says. "These seizures were so life-threatening. None of the seizure medications were working."

The couple were referred to a neurosurgeon who specializes in dwarfism at Cedars-Sinai Hospital in California, and then to a clinic at University of California at Los Angeles.

The couple were disappointed to hear Mateo was not a candidate for brain surgery because his seizures occur in both hemispheres of his brain. But they were hopeful when doctors said an operation to remove Mateo's tonsils and adenoids might help with his breathing, Whitney says.

The surgery itself went well. But on day three, Mateo began failing because of complications from pneumonia, she says.

"It was really bad. His whole body started shutting down — his heart, lungs, kidneys," Whitney says. "We just prayed. 'God please bring relief for Mateo from all of this pain. Bring him back or do your will.'"

On the fifth day, Mateo's vital signs began to show improvement. But it has been an excruciatingly slow progression fraught with setbacks.

"It is going to take a long time for repairs," Whitney says.

Dwarfism affects a person's skeletal system, while impacting the entire body. Statistics show people with achondroplasia reach an average maximum of 4 feet in height. Although Mateo's bones will never grow to normal lengths, his organs will continue to grow like those of a person without the syndrome, Enders says.

Because Mateo's lungs were severely damaged by the pneumonia, special feeding and tracheotomy tubes were inserted. Mateo must receive a special high-fat diet dripped into his intestinal tract via a feeding port. Not only would stomach feeding cause Mateo discomfort and impede his ability to breathe properly, the fragile boy would likely aspirate his food, which could cause another bout of pneumonia, Enders says.

"If we put the food into his tummy, it would cause his stomach to expand and press up toward his lungs, compressing them," she says.

Mateo also will remain on a ventilator for the next few years. And possibly until he is a teenager, says Enders.

"It's going to be a long road. Unless there is a miracle," Enders says.

Mateo has been hospitalized all but seven of his 22-months-long life. And much of that seven months was spent in Ronald McDonald housing, waiting on more procedures, Whitney says.

To bring Mateo home from the hospital in California, insurance coverage required the Lopezes to reside within 20 minutes of adequate medical facilities. They left their life in Gold Beach last summer, along with the support of having both their extended families nearby, and moved to Medford, Whitney says.

"Going away from all that was really scary," says Dominic, a wildland firefighter for the U.S. Forest Service.

Whitney and a home nurse sit on the living room couch with Mateo. Both parents and the nurse had worked together to move the tiny boy from his crib and into the living room. Mateo made the short trip down the hallway strapped into a "Kid Kart" — a cross between a wheelchair and a stroller — while the three adults wrested with Mateo's ventilator, humidifier, suction machine, oxygen tanks, feeding pumps, oxygen and heart monitors and his backup battery packs.

"(The monitors) alarm if he's having trouble," Whitney says.

The Lopez home has been "tagged" by the power company and fire department. Paramedics have been briefed about Mateo's medical fragility. Ensuring adequate electrical power is a matter of life and death. If there is a power outage, the backup batteries will only last a maximum of 10 hours, Enders says.

"Mateo has needs greater-than-typical response," she says.

Caring for Mateo has required a steady stream of nurses, doctors, machines and medical regimes, and a lot of faith, Dominic says.

Mateo's airway port must be suctioned four times an hour, "otherwise he can't breathe," Dominic says.

This is just one of many vital medical procedures the couple perform myriad times throughout the day and night, Enders says.

"It's been quite the roller coaster ride. But we adapt," Dominic says.

After Whitney finishes the procedure, she smiles down at Mateo, who beams back at her.

"Mentally he's all there," Whitney says. "He can't talk because of the trach. But you can see it in his eyes. We can't wait until he can crawl and play."

Mateo's big brother slips out the back door to play by himself in the backyard. Enders tracks Kyenne's little red toy car on the palm of her hand as she watches the active 3-year-old. Mateo's medical challenges have created limitations on his brother, too. Kyenne has lived in hospitals for the majority of his life, she says.

"Kyenne has lost a lot. He hasn't had a lot of fun," Enders says.

Kyenne would benefit from being enrolled in Head Start or some other form of pre-school — for the socializing, the interaction and the education benefits. Unfortunately, they cannot afford tuition to a preschool. And Dominic's salary tips them just over the qualifying range for Head Start.

"We want both brothers to be raised as loving siblings," Enders says.

Dominic and Whitney provide inspiration to those who thought they had seen it all. Whitney has an inherent gentleness that makes her the perfect mother and nurse, Enders says.

"If she had her R.N. license, I'd hire her in a heartbeat," Enders says.

Dominic takes Kyenne with him grocery shopping and on other errands so that, when there is a home nurse available, Whitney can clean their home without a rambunctious 3-year-old underfoot — or, hopefully, sneak in a nap.

"Dominic has shown me what a loving father can be," Enders says.

The Lopezes are struggling to pay the medical costs that aren't covered by their insurance, she says. They also have difficulty finding enough skilled nursing staff to provide respite support, she says.

Dominic and Whitney sleep in shifts when a home nurse is not available, making sure someone is always watching over Mateo.

"Mateo might be disabled, but he couldn't be in a better home," Enders says. "I haven't heard a peep of complaint. They are exceptional people."

If you would like to help the Lopez family, call Toti Enders at 541-774-8145 or write to P.O. Box 875 Medford, OR 97501.